Recently I had the opportunity to attend part of the New York ReelAbilities Film Festival. The 6th annual event in New York involved all five boroughs, but was based primarily at Manhattan’s Jewish Community Center. The program featured a dizzying spectrum of disability perspectives and concerns on film. It also included talks, photographs, parties and story-telling in presented by The Moth.

RealAbilities NY Disabilities Film Festival, 2014

I liked everything about this festival. Perhaps the best aspect is that individuals with all kinds of issues can come, in real life, and meet other people with similar kinds of concerns. And so might their parents, or spouses and others who want to know, to gain a better sense of the experiences of people with varied physical forms. I don’t know that I could have imagined this kind of event happening, when I was a child or a young doctor.

For this post, I’ll stick to “the Moth” presentations, which numbered five. My instincts tell me not to declare favorites, so I’ll just provide a tidbit about each of the stories:

The first speaker walked onto the stage with just a bit of guidance. He was young, blind, handsome and funny. He spoke of growing up in a suburb. He was assigned chores and minded those. When in his early 20s, he signed up to participate in a program that involved cleaning on Coney Island, the people in charge tried to keep him standing at the edge of the project, to not let him help out in a meaningful way. He felt marginalized. By speaking with the other participants, gradually he entered the workspace. He got to get his hands dirty, doing grunt work with the rest of the crew. Happiness ensued.

Next, a dark-haired, smiling woman who has aphasia – difficulty speaking, casually stood as she told her story. Her name is Yvonne Honigburg, and she advocates for the National Aphasia Association. She described growing up with a sometimes secretive mother, of learning she was adopted, and of searching for her biological mother. Eventually the three met in a restaurant in New Haven, CT. Upon meeting Yvonne’s natural mother, the adoptive mother said something surprising. It ended well.

A woman in a wheelchair delivered the third, marvelous story. Millie Gonzalez has long curly reddish hair. She wore a sequined, shiny top and spoke of how she has always loved to dance. Evidently she has spina bifida, and after years of dancing with crutches, as a child and in high school, she’s learned to dance in a wheelchair. A while back she attended a previous ReelAbilities festival and saw the film Musical Chairs. After the event, upon trusting a man, perhaps the film director, he “twirled” her in the air, or something like that. Her heart stopped, momentarily, for the thrill of it all. It was very romantic. After that, she’s gone belly-dancing and advocating for people with disabilities.

The fourth speaker told of a moving story of her life with severe kidney disease and impaired vision. When she was a child, and the doctors finally explained to her what was wrong, she felt a sense of relief, knowing at least that there was an explanation for what she was experiencing. After some dark times, and dialysis, she received a kidney from her mother. Still, she lacked self-esteem, and hibernated. She spoke openly and vulnerably, about what led her to see the value of living. #uplifting

The final speaker walked on stage and, after a few minutes, mentioned that she had a prosthetic arm. She’d spent most of her childhood, adolescence and college years trying to hide her deformity. She didn’t want to be perceived as defective. In becoming a mother, she realized that her child had certain expectations….I cried, just a bit.

I can’t resist mentioning that today I caught part of another old baseball flick in the gym. Pride of the Yankees, on TCM, features Gary Cooper as Lou Gehrig. Sam Wood directed this 1942 MGM classic in which Babe Ruth appears, briefly in cameo, as Babe Ruth. A Times reviewer, writing after its July 1942 release, complained that the film didn’t include enough baseball, nor sufficient drama until its end. That may be true. But your athletically-challenged author was moved by this film, and stopped by some of the scenes depicting how information was conveyed in that era, about the star’s declining health.

movie poster, 1942 film “Pride of the Yankees”

I learned about Lou Gehrig in medical school. Amyotrophic Lateral Sclerosis (ALS, aka Lou Gehrig’s Disease) is a progressive and serious neurological disease that tends to affect a person’s voluntary (“motor”) muscles, such as those of the arms, legs and face. The CDC maintains a national registry for the condition, which is of unknown cause and, to the best of my knowledge today, remains on the shortening list of incurable conditions. The NIH estimates that 20-30,000 people are living with ALS, and that some 5,000 or so are found to have this condition each year in the United States. It typically affects, or “strikes” – as it’s almost universally metaphored, people in their forties or fifties.

A former colleague, whom I admire and will always remember for what he has taught me about immunology and even more by his working through illness, has ALS and has continued contributing for the long time, over 20 years, that I have known him. What enables some people with illness, i.e. patients, to keep contributing in their field of expertise is, first, their wanting to keep working. But it also requires a sensitive and encouraging environment – a workplace that allows people with knowledge, who become disabled or limited by health concerns, to work as best they can.

I learned that Lou Gehrig was a New Yorker. He was born to German immigrants in Yorkville, near where I live in Manhattan. According to his biography in the Baseball Hall of Fame, the left-hander was born in June 19, 1903 and died on June 2, 1941, a few weeks shy of what would have been his 38th birthday. He was called the Iron Horse and played first base for the Yankees. In the movie, it takes Gehrig a while to realize, or admit, that he can’t play baseball – that he’s stumbling and struggling to even hold a bat, or run or walk. Once the athlete acknowledges his limitations, he is treated kindly and generously by his manager, teammates and fans. At first, the doctor in the Scripps Clinic doesn’t want to tell him the truth about his condition. But Gehrig wants the numbers, the statistics, facts. Finally, after Cooper, playing Gehrig, asks him if it’s “three strikes.” The doctor answers that, yes it is. The patient understands his meaning. No one in the room can pronounce the words “amyotrophic lateral sclerosis,” but Gehrig gets the picture. The patient doesn’t want to tell his wife but, as these things usually go, she figures it out.

The Yankees and Gehrig’s manager try to keep his illness a secret, but after he gives up his spot on the roster, it becomes progressively evident that something is seriously wrong. One nugget in the film is an interaction with what might be considered a peer patient. Early on, Gehrig encounters a boy who can’t walk, and offers him encouragement. Later, once Gehrig’s condition has become evident, the young man comes to tell him thanks, and to show Gehrig he’s gotten better, by not giving up. But the boy becomes tearful and appears not to enter the stadium. It seems his hero’s deteriorating condition is too much to watch.

On July 4, 1939, Gehrig gave a speech before a packed Yankee stadium. He thanked his teammates, coach, sportscasters, athletes of other teams, fans, his parents and his wife, and concluded, famously, that he was “the luckiest man on the face of the Earth.”

Last week I traveled to Atlanta, Georgia, where the American Society for Bioethics and Humanities (ASBH)* held its annual meeting. Most of a thousand people participated in the four-day conference. The sessions drew a mix of nerdy physicians like me, nurses, professional bioethicists, philosophy professors, a few lawyers, historians and artists.

It was really a lot of fun. Fun, that is, if you’re into subjects like philosophy in medicine, literature in medicine, medicine in literature, ethics in medicine, technology and privacy, justice and parsimony in health care, etc. I hadn’t heard the word “epistemic” so many times since I was in college. I felt young and idealistic, talking seriously about philosophy, as though it matters. (For the record: it does.) This was, clearly, a medical society meeting unlike others. For instance, an academic named Woods Nash, of the University of Tennessee, gave a talk on David Foster Wallace’s story, “Luckily the Account Representative Knew CPR.”

original cover image (Wikipedia), publisher: Random House

On the first day, I walked into a provocative plenary talk by Julian Savulescu, an ethicist and Oxford professor. He presented an argument that that using medical tools for the purpose of moral bioenhancement might be a good thing. (If this topic brings to mind A Clockwork Orange, you’re on track. Think also of Huxley’s soma, as a questioner raised.) All very serious. The next day, a packed ballroom of people heard from Amy Gutmann, President of the University of Pennsylvania and Chair of the Presidential Commission for the Study of Bioethical Issues. She spoke about the concept of deliberative democracy, and the value of teaching ethics. Toward the end, she entered into a humorous and seemingly candid discussion of men and women in the workplace, “having it all,” and common sense. “Time is finite,” she mentioned.

I could go on, and list all the lectures and smaller sessions, but this post would get dry. Besides, I couldn’t possibly attend each one, nor can I give all the speakers’ due credit. Some talks were better than others, as meetings necessarily go. But I can’t resist a plug for the presentation by Rosemarie Garland-Thomson, a professor of women’s studies and English at Emory, on perspective and disability. Another favorite had to do with technology and science. David Magnus, of Stanford University, considered whether research accomplished through gamification – a means of crowd-sourcing science – on platforms like FoldIt, EteRNA and EyeWire should be covered by the usual rules for biomedical research. “Are the players scientists?” he asked.

The tone, overall, was intense. Intellectual, brain-stimulating… By contrast to other medical meetings I’ve attended, there was little glitz, scant makeup and limited Wireless. Perhaps the most surprising aspect of the ASBH conference was the distribution of freebies at booths in a display area, where attendees gathered for an opening evening reception and, on other days, breakfasts. Of course it was all minor stuff handed out, like pens and candy, mainly from university departments seeking applicants for fellowships, and academic presses selling books. The most substantive, and useful, gift I received (or “accepted” – a term with greater moral accuracy, from my perspective) was a green umbrella from the Hastings Center – a bioethics stronghold where I’d love to spend some time learning and doing research, in the future.

On Sunday morning, I attended one of the last sessions, on decision aids in bioethics. We lingerers were treated to three terrific talks. I can’t cover them all. So to close this post, I’ll refer to the promising work of Michael Green, a physician and bioethicist at the Penn State College of Medicine. He and colleagues have been developing an on-line decision tool for advanced care planning with grant support from the NIH, the American Cancer Society and elsewhere. The website, MakingYourWishesKnown.com, enables individuals to detail their wishes through an interactive questionnaire. Green and his colleagues collect and publish data on users’ feelings upon using the decision aid. They can measure, for instance, if it gives people a sense of control, or reduces fear, and if patients’ families and doctors find the “outputs” useful. I, for one, intend to try out the MYWK website.

And I do hope to attend another ASBH meeting. Next year’s is planned for October, in San Diego.

Before I became a journalist, I rarely talked about my medical problems. When I was working at the hospital I tried not to mention, or show, the pain I was experiencing in my back to colleagues or even friends. Eventually I had to tell a higher-up about it, because I didn’t take narcotics and the pain became limiting. Rounding was difficult. I needed a chair.

And so I was struck by an essay in today’s Times by a woman who has dystonia, a neurological condition. She writes:

Long after “coming out” to my friends about my diagnosis, I realize now that what’s most important is telling people about the disease. Telling waiters why I’ve brought a special pillow with me to a restaurant; legislative aides who want to know what their bosses can do; and strangers who ask, almost rhetorically, if I am in pain.

The point of the article, as I understand it, is that big-name diseases like cancer get loads of media attention and sympathy from strangers. Relatively few people “get” the suffering of those with rare or less mortifying conditions. This is especially true when there’s no celebrity who speaks, writes, sings or otherwise whines or rails on it. People who don’t feel well want empathy, or at least a bit of consideration.

OK, now I’m going to say what’s hard, and I might regret, but I’m not sure that everyone needs to hear about all of our ailments: Sure, if you’re a writer, you can sort through your medical issues and feel better by expressing yourself, as I sometimes do here, and in principle and occasional reality help others facing similar disorders. And if you’re an employee somewhere and you need to take time off or accommodation for a disability, you may need to talk with your boss about what’s going on.

But do you need explain to the person on the checkout line or, say, a mother organizing a bake sale, why your back hurts? Why you frequent the women’s room? Or why you need a seat on the bus?

I am truly ambivalent about this.

My only way out is to tell you of an error I think I made, in withholding information. After my spine surgery, when I couldn’t sit up without assistance, or raise my arm to brush my teeth, and then eventually was practicing walking with a cane, wearing a brace in warm weather under modest clothing, I deliberately didn’t visit or walk by my place of work. I didn’t want my colleagues to see me looking frail. I wanted to return to work looking strong and standing straight up, as if nothing were wrong inside.

Already I’d had the cancer treatment – surgery and chemo – and they knew about that, although we didn’t speak of it much. Mainly it was women coworkers who visited me when I was hospitalized. That is understandable. Most of my colleagues didn’t know about my back. Not really. A lot of people have back pain, after all. What’s the difference, scoliosis, fusion, a revision, a clot, whatever…Or about my other conditions. It was TMI.

Over time I was becoming a burden to the group and – astonishingly in retrospect, I felt badly about that. I worked harder than most, to compensate for my disability (which I had trouble acknowledging, internally), and that further damaged my health. I sometimes wonder, now, if I had told my colleagues earlier, and let my non-cancerous conditions “show,” would I still be practicing medicine today?

Maybe.

Not everyone wants to hear about it. Or know. Besides, plenty of people have stuff they don’t mention –

“Everything is copy,” is a phrase Nora Ephron learned from her mother. That’s according to her son, Jacob Bernstein, who detailed some of her final days in the New York Times Magazine. But Ephron kept quite a bit to herself. She was a sharp and successful lady.

From an article in today’s New York Times on hiring discrimination against people who smoke:

“There is nothing unique about smoking,” said Lewis Maltby, president of the Workrights Institute, who has lobbied vigorously against the practice. “The number of things that we all do privately that have negative impact on our health is endless. If it’s not smoking, it’s beer. If it’s not beer, it’s cheeseburgers. And what about your sex life?”

I think he’s right, more or less, in a slippery-slope sort of way, seriously –

I’m saddened by how many ADULTS can’t get their #rheum 2 understand the level of severity of their pain.What hope is there for my daughter?

I half-watched an on-line exchange about the issue, and then went about my family’s dinner preparations.

The message came from Amy Cunningham, who blogs about her daughter’s experience with juvenile rheumatoid arthritis and uveitis to the starting tune of Van Morrison’s “Brown Eyed Girl.” I couldn’t bear the tracks that followed, playing automatically and disjointedly in multiple browser windows, so I shut them off. But I kept on thinking about the girl’s pain, and the mother’s despair.

The problem of doctors dismissing patients’ pain is very real. I know this from my own experiences, like when I fell on the icy sidewalk and broke my right arm in the midst of breast cancer treatment. My elbow became gigantically swollen because my platelets were low – a side effect of the chemo – and as a consequence of a non-steroidal anti-inflammatory agent I was taking for back pain. In the E.R. the doctors gave me enough pain meds only after I’d been made to feel humiliated by some of the staff. Another time, after a 10 hour back surgery in which the orthopedists cut a steel rod fused to my spine and otherwise manipulated that column of nerves, the anesthesiologists laughed in the recovery room, hinting that my pain was due to depression.

How wrong they were –

Medicine is a very macho profession. For the record – when I had my wisdom teeth removed, I had them all taken out at once and returned straight to work in the lab. I drew my own blood for experiments with lymphocytes, countless times. Once I inserted my own intravenous catheter, while pregnant. When my spine started to crumble, I had trouble acknowledging the pain for several years. I felt embarrassed, compromised by it. In the year before surgery, I had a CT myelogram (which involves a lumbar puncture), went home and prepared for a journal club presentation the very next day. And so on. Only later, when I could hardly walk, I mentioned my limitation because I needed to cut back on my time standing while on rounds at the hospital. Some colleagues were sympathetic, but others were less generous.

Being tough has its merits. But denying pain, or suggesting that people who complain about their symptoms are weak, is not helpful to anyone. Pain can be very real, and disabling.

I think the problem for some doctors is one of arrogance; they perceive pain as something that happens to “others” and not to them, as if it were a sign of weakness or a character flaw. For some, the denial of patients’ pain may be some kind of strange defense mechanism, a psychological device by which they distance themselves from those affected, and so it might seem like it couldn’t happen to someone like them.

I’ll be staying near my home in Manhattan this week. But if I did have plans to travel by airplane for the holiday, I think I’d be apprehensive about the new screening procedures implemented by the Transportation Safety Authority (TSA).

My concern is not so much with the scanners. (For a detailed review of these machines, I recommend this article in Popular Mechanics.) There are two types of scanners in current use: millimeter wave machines, which use radio-frequency waves to generate 3-D images, and back-scatter units which, by design, use low doses of x-rays to visualize what’s inside a person being scanned.

Rather, I’m worried about screening errors – false positive and false negative results, and about harms – physical and/or emotional, that patients and people with disability may experience during the screening process.

In the context of travelers’ screening, a false positive occurs when an examiner thinks he or she sees or feels something abnormal – say a weird expression on a passenger’s face or when an initial, low-threshold alarm goes off somewhere in the system – but the person isn’t carrying any dangerous or contraband items. That early, false positive signal puts the traveler through extra procedures, possible embarrassment and/or stress.

A false negative happens when a screener misses an explosive device or other harmful material. A good example is the so-called Christmas bomber, who last year got through airport security and boarded a plane with explosives effectively hidden in his underwear. In that December 2009 instance, the examiners failed to identify a passenger who carried a potentially lethal weapon. The TSA’s goal should be to minimize the number of false negative screening tests. That’s because we wouldn’t want someone to get through screening and board a plane while carrying a weapon.

The problem is that it’s easy to imagine an imperfectly-trained, inexperienced or just plain tired screener missing an irregularity in someone’s 3-D or other kind of whole-body image, especially in the context of a steady stream of passengers rushing to catch flights. The operators might miss weapons despite the visual “information” available, right in front of their eyes.

So I don’t object to the new technology, which should increase the accuracy of the screeners’ function. Ultimately, though, we can’t get around the fact that TSA employees are human and some will be nearing the end of their shift; the scanners can reduce but not eliminate these kinds of errors.

My second concern is with the potential harm to patients and people with disabilities. People may be harmed physically if, for example, a screener mishandles a pump or other device. There’s been a lot of attention to one recent report, that of a 61 year old man with a history of bladder cancer whose urostomy bag ruptured during an airport pat-down. The man described his urine spilling, and his feeling humiliated.

This is a very understandable reaction; as someone who has implants after mastectomies, and who carries a lot of internal metal hardware in her spine and elsewhere, with scars galore, I know how damaging can be a stranger’s scrutiny. Unlike doctors and nurses, most TSA employees are not accustomed to seeing colostomy bags, stumps and other disfigurements usually hidden under a person’s clothing. Even an accidental, unkind expression in a look-over, or an insensitive pat-down, could make a person feel pretty bad about their ailment.

Of course we don’t have to travel on airplanes. I don’t see this as a civil rights issue; I don’t think there’s a right to board a public vehicle without full screening if the TSA deems it’s necessary for public safety. Rather, I accept that an aspect of having illnesses is that sometimes you have to put up with things other people don’t experience.

What would help, clearly, is better sensitivity and training of TSA staff, as was considered in response to the urostomy incident. But given the huge volume of travelers and enormousness of our complicated transportation system, it seems unlikely we’ll get a satisfactory solution among all staff at all airports, at least not in time for Thanksgiving.

From the patient’s perspective, there are some practical points that might help. Amy Tenderich, at Diabetes Mine, offers tips for individuals with insulin pumps. Trisha Torrey has an interesting piece on her Patient Empowerment blog (where she argues that this is not an empowerment issue) and recommends a simple, common-sense approach, which is to arrive early at the airport. As for me, I carry cards indicating the dates of my surgeries and the nature of my hardware. Now, I’ll add to those a note from my doctor.

Meanwhile I hope the screeners will use their new equipment to do a better job at detecting people carrying weapons. And that those individuals who plan to boycott the scanners with a National Opt-Out Day tomorrow, will change their minds. The TSA employees have enough on their hands already, without a demonstration; it’s in everyone’s interest that the screening be effective, hopefully 100 percent, in this holiday season.

If there’s one obvious thing I didn’t learn until I was well into my forties it’s this:

Don’t let a day go by without doing something you feel good about.

This message is not unusual, cryptic or even interesting. It’s simple, really so trite you could find it in most any “how having cancer changed my life” book available in bookstores and on-line.

Why say it again? Everyone knows we should relax and enjoy sunny weekend days like this.

Because it’s a reminder to myself, as much as for some readers and maybe a few fledgling doctors out there. One of my biggest regrets, during and after so many medical hurdles, is that I was overly ambitious. I am, probably still, one of those people who’s hard-wired to achieve. At work, when I was a young physician-hematologist-oncologist-cancer researcher-pregnant wife, I worked long, long hours. After dinner in our apartment, I’d stay up late, reading, and get up early enough to read the paper and have some breakfast before morning rounds. Later, as my career matured, I used extra hours for research, presentations, grant proposals and, of course, more reading. I loved my work as much as anyone I’ve ever known, wishing I could put more time into it, not less.

Illness places real limits on people’s capabilities. I refused to accept this. I just kept pushing. No excuses.

Looking back, I see that I should have slowed down earlier in my career and made more time for my family and for myself. I needed physical therapy and an occasional day off. Even while I had breast cancer, undergoing treatments, I worked in the clinic, took on administrative responsibilities at the hospital (in lieu of being on-call), and continued to write and review manuscripts, besides teach. After my back operation, a huge, painful and bloody affair, I returned to work and took call like everyone else. It took me too long to realize that I should pull back.

So I think it’s a lesson, or at least it’s one for me. It has to do with the Passover story of Exodus. Making sure to enjoy life, taking some time of each day and week to focus on what you choose, is the privilege of not being a slave.

An unfortunate reality is that many people work long hours because they must, due to financial necessity or because they have no choice. But for those who aren’t so strapped that they must work 16 hour days, who do it for pleasure as much as for wages or for riches, maybe it’s a reminder to take care. Sometimes it takes discipline to know when to shut out the light, or even call it quits. Less is more, sometimes even better.

It shouldn’t take a catastrophic illness to get this message through. Maybe just a good night’s sleep, or another sunny day tomorrow.

I was tempted to write about Ethan Hawke, hematologist among vampires in Daybreakers, but gore’s not my favorite genre. A mainstream choice would have been Harrison Ford solving the enzyme deficiency of Pompe disease in Extraordinary Measures, but I didn’t get sucked in. I chose Precious, instead.

Poster for Precious, the film based on the novel “Push,” by Sapphire

This luminous movie relates to the practice of medicine everyday, big-time. Directed by Lee Daniels and based on the novel Push by Sapphire (Ramona Lofton), the film follows a very obese Harlem teenager who’s pregnant with a second child by her abusive father. She’s humiliated daily by her welfare-dependant mother who forces her to cook greasy food and perform sexual acts all-the-while telling her she’s worthless. She’s 17 years old and can’t read. Things can get worse, and do.

What’s relevant to medical lessons?

For doctors –

The message of Precious, that every human life has value, should be obvious to every person employed in the health care system. But I know too well that’s not true.

When I was a medical student in 1985, working with a team of surgery residents, we cared for an obese young woman from Harlem who came in with a life-threatening case of pancreatitis. Her internal insulin-manufacturing organ was so inflamed that her entire gigantic abdominal cavity was tender and bloody. During what seemed like an endless operation in the middle of the night I stood and held firmly a retractor as best I could. The next morning and thereafter, when we made rounds, the residents called her “the whale.”

I learned a lot about pancreatitis and surgery that month. But I couldn’t understand how she, my patient, tolerated the team’s attitude. She didn’t seem to mind, perhaps because we saved her life and the care we provided was free. In retrospect, I wonder if maybe, like Precious, she was too-accustomed to disrespect.

Of course, this is an extreme example from 25 years ago. And I know from my experience working for years in a hospital, and in my years as a patient, that most doctors treat most patients with appropriate dignity. But those residents I worked with then are senior practicing physicians now, likely some on the faculty of medical schools. The disposition to disparage patients, more often subtly – in keeping them waiting without good reason, in dismissing their long lists of real concerns, in somehow putting ourselves above them and even, still, occasionally expressing frank contempt for some unfortunate souls still permeates the hospital culture.

For patients –

When Precious is abused, her mind runs elsewhere. She imagines herself, huge body and all, cast glamorously among television stars or dancing with popular singers. She pretends that she’s all right even when she’s not, really. Finally she speaks up for herself, telling a social worker about her predicament.

Ultimately that’s what makes the difference – her confidence in the value of her own bruised life. She recognizes that, despite everything, she’s a full-fledged human deserving better and has the guts to ask for help. By insisting, by knowing, that her life matters, she pushes herself out, if only partly, from the bleakest of circumstances.

If you’re disabled, hurt, wounded, damaged – ask for help when you need it. Respect yourself, as Precious did. That sends a signal to doctors that you value your life, and they should treat you accordingly.